A Road Less Travelled – Living with Neuroendocrine Cancer

About

At the age of 53 on the 20th June 2015, I was told that I had a Neuroendocrine tumour, which had metastasised to my liver. As you can imagine it came as a bit of a shock.

I am in now in my late fifties, married with 4 children (all now successfully independent), and I believe that I still have a full life to live, with plenty of new experiences and opportunities along the way.

This blog helps me cope with my disease, and as well as tracking my journey through this disease. I also hope it may help to inform along the way; as well as helping to raise awareness about neuroendocrine cancer.

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13 thoughts on “About”

I love that you are so upfront about all that goes on. I wonder sometimes if I should be more graphic about the NETs part of life. Yet, I find that this is just one more aspect to life. Thankfully, we all go through the same old crap in life life…just some of us take that “crap” part more literally, than figuratively! 😉

I work for a publication called Health Monitor. We are putting together a guide on Carcinoid Syndrome, and I was wondering if I could interview you for my story? You can reach me at lindsayb@healthmonitor.com

Dear Kath,
Just found your blog. Let me begin by saying that I’m sending good thoughts your way and that I like your attitude. On 27 July it will be a year since I was told I have incurable cancer. I’ve done little to no research, am just listening to what friends and family members are finding online. I was almost 74 years old at the time and in a good marriage. We have four great (adult) kids and seven grandchildren. Later I found out that my cancer was/is NET, clearly visible in lungs, bones, and liver. Radiation followed, then chemo for six months and, finally, the message that nothing else could be done for me. The cancer cells were (are?) multiplying rapidly. A couple of days after hearing that I probably wouldn’t live to see 2017, my oncologist called to tell me about Afinitor and the possibility of being accepted into Novartis’s compassionate-use treatment option (because the drug is not on the market here in Belgium). Afinitor might give me some extra time, and the side effects (after two months and one week) are bearable so far. One important thing to pass on to you and your readers is that I suffered from a backache for more than six months (maybe closer to a year) before finally going to the doctor. Never thought I’d be diagnosed with metastasized cancer.
I translate and copy-edit for two magazines, work that I can do at home and that has been vital to how I feel about myself. It gives me a reason — besides love — for getting out of bed in the morning.
I hope to keep reading about your journey.
Love,
Donna

Glad you like my blogs, but sorry to hear that you have it too. Looks like we were diagnosed about the same time, once I got over the shock I did lots of research, but it is a very confusing world out there. Do you read Ronny Allen’s blogs, they are very good and explain things well in a non-confusing way.

Fingers crossed for the affinator, and it is good to keep busy when you ca, and I am sure your grandchildren keep you on your toes. I think I have had this for a very long time, and it has completely changed my life, but all things considered not in a bad way.